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Thread: 1 in 400?

  1. #21
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012

    Some data for you - just because you had to watch paint dry.

    • 1 in 3 will develop some form of cancer.
    • 1 in 9 women will develop breast cancer at some stage in their lives.
    • 1 in 9 men will develop prostate cancer.
    • 1 in 20 over 65 have dementia.
    • 1 in 22 people have chronic heart disease.
    • 1 in 33 people have diabetes.
    • 1 in 520 people in England and Wales will have a stroke each year.

    Lifetime risk of developing Parkinson’s disease is about 1 in 500.
    Lifetime risk of developing multiple sclerosis is about 1 in 330.

    Cancer Research UK
    Diabetes UK
    Alzheimer’s Society
    Stroke Association
    Parkinson’s UK
    Multiple Sclerosis Trust

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  2. #22
    Forum Member nunhead_man's Avatar
    Join Date
    Jul 2017
    Good morning Ellie,

    Thank you for all of that - a lot of work there

    And I'm pleased to say the local borough seems to have accepted the charter - although I need get back to the email I think seen coming in to see exactly what happened




    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

    "Things turn out the best for people who make the best of the way things turn out"

  3. #23
    Dementia statistics.

    I sit on the Patient Participation Panel of my local GP surgery. At our meeting last night we had a presentation form a specialist dementia nurse. She came out with, to me, two startling statistics.

    One in three people born now will be affected by dementia in their lifetime.

    Currently, about 850,000 people in the UK have dementia.


  4. #24
    Forum Member Kayleigh's Avatar
    Join Date
    Nov 2018
    Hello Doug.

    Thank you for sharing the statistics about dementia.

    Yes, like you, I find those statistics about dementia very startling.

    Currently 850,000 people with dementia in the UK is a huge number of individuals and probably most of them require day-to-day care. There are also probably 850,000 partners/wives/husbands who this must have a very significant financial impact on because they have to care for their loved one who has dementia or make a large financial contribution for them to be cared for.

    SInce being diagnosed with MND, I have been jolted into the reality that free healthcare 'from cradle to grave' doesn't exist in this country for everyone and the benefits system does not cover 100% of healthcare costs for all medical conditions. With the statistic of 1 and 3 people in future being diagnosed with dementia, it is very possible that even if someone is not diagnosed with dementia, they will have to bear some substantial cost of the healthcare of a loved one who is. (Definitely, something that people in the UK should be made more aware of.)

    It is bad enough to being diagnosed with a serious long-term illness without having to think about the financial impact as well. Younger generations tend not to think about this and they think that they will not be faced with this until after they have retired, if at all - I thought this and thought that I would not have to deal with any major health issues or costs relating to them for at least another 20 years - sadly, I have been proved wrong ..... as the saying goes 'it never rains, it pours!'

    Sorry, not very upbeat post from me today but just wanted share my thoughts.

    Hope you are having a nice day.

    Best wishes,
    Kayleigh x
    Last edited by Kayleigh; 28th November 2018 at 15:20.

  5. #25
    Hi Kayleigh

    Thanks for sharing your thoughts.

    No need to apologise. It would be difficult to be upbeat about such figures.

    What I also didn’t realise before the talk was that there are many, many different recognised types of dementia, of which Alzheimer’s is the most common (50-70%).

    Apart from being much more common than MND, there are similarities: both are progressive and terminal, the causes are poorly understood, only palliative treatment is available, life expectancy is highly variable but 3 – 10 years is common, and, crucially, both have massive emotional and financial impacts of the patient and family.

    Like you, I’d never considered the financial impact of illness. On the rare occasions I’ve needed operations or treatment, the NHS provided it and peripheral costs were minimal. At the moment, the relatively small costs from my MND are met from the little bit of help I get from the state. But I can see trouble ahead.

    Forgive the black humour, but dying is going to be an expensive business!

    But, we must try to look on the bright side. And, as you say Kayleigh, try to take one day at a time.

    Doug x

  6. #26
    Forum Member Kayleigh's Avatar
    Join Date
    Nov 2018
    Hello Doug,

    Thank you for information about different types of dementia. I had very elderly relatives who had Alzheimer's (many years ago) and at the time I thought that Alzheimer's was another name for dementia rather than being a type of dementia.

    So true that dying can be expensive - payment for carers and any necessary house adaptations etc .. and to top it off there is the high cost of funerals! That reminds me, I must google pre-payment funeral plans (such fun?!).

    I am trying to stay positive about things and it is always lovely to be in contact with you and other people on this forum. Even if the subject matter of the threads is not always cheery, I enjoy reading the views, information and advice that all the great people here have to offer. The statistics/info on this thread have given me interesting things to think about that I have not thought about before. I am more of a words person than numbers person, and so many thanks to you, Ellie and others on this forum for presenting statistical data/info in such a clear and interesting way.

    Very best wishes,


  7. #27
    Kayleigh afaik dementia care is fully funded by NHS. Social care needed after stroke recovery is not. All very complicated but it's to do with ongoing disease. So carers for people should be fully funded

  8. #28
    Forum Member
    Join Date
    Feb 2019
    Haslemere, Surrey
    All I know is that I know far too many people who have or have had MND. The 1 in 300 does not stack up from my experience. It suggests I have thousands of friends and acquaintances.
    And, no matter what the stats, it is far too many.
    My GP apologised to us that she just does not have the experience to help and advise us with what we need.
    So much of this seems unacceptable in this day and age.
    Rant over...sorry....Marion xx

  9. #29
    Rant away Marion!

    Through this forum, It's become shockingly clear to me over the last couple of years that the quality of primary and secondary NHS and social care varies hugely across the UK.

    Remember 1 in 400 is the lifetime risk. With a diagnosis rate of about 2 in 100,000 the average GP is going to see very few MND patients. This is why referral to specialist neurological clinic is vital. Though again I've been shocked reading how slow and erratic some of these processes can be for some of us.

    It was sad to hear MND on the news this morning in the context that it was:


  10. #30
    Forum Member Barry52's Avatar
    Join Date
    Mar 2012
    Newark on Trent
    Hi Doug,

    A very powerful and emotional interview but I suspect nothing will change in the near future.

    Iím going to do this even if it kills me!

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